I don't even know where to start.-a vent-just need a little support.

My emotions have been all over the place since I have been approved for surgery. I am trying to figure out if I'm scared, nervous or if it really has to do with the surgery at all.
 
I have 2 developmentally delayed identical twins 2 y/o girls. They were born @ 30 wks, spent 3 months in the NICU and I have been through hell and back for them. I have been in the medical field in nursing since 95. I can no longer work b/c my girls have too many dr.s appts @ Children's (in another state) and have weekly therapy appts. I have been saying all along the need AFO's (braces on their legs) b/c they walk on their tip toes have poor balance, fall and get black eyes and such. As a mother it is torture to see my babies go through this. I have been ignored for over 6 months. So FINALLY literally as I get the call from my insurance person telling me I am approved, the Orthotist is at my door to evaluate them. Within 5 minutes he declares they need full AFO's. Every emotion starts running through my brain. Relief, that they finally are getting help, pissed, b/c I have been saying all along this is what they needed and I was ignored. Just every emotion under the sun.

So I really don't know if it from the surgery, my girls or both. IDK maybe I'm afraid if something happens to me who is going to be their advocate b/c dh is CLUELESS. I am so stressed out I have a massive headache and my shoulder are so tight. Not to mention my 4 y/o ds has been acting like a crazed fool. Testing his limits and pushing my buttons.

I really need to make a therapy appt. LOL

You need a bubblebath.  With candles and soft flowery music.  And a locked door. 

((((Hugs)))) I know how frustrating it is when you know what your special needs child needs to have and no one listens. You just want to scream "I told you so!" at them.

I've been in your shoes. Just keep chanting "this too shall pass". And take that bubble bath!

I don't have any words of wisdom but I am wishing you all the best.

I agree--bubble bath, locked door, candles, and a beverage of your choice! I was extremely emotional when I got my date too--I had just lost my Gma. So it likely is all the stress getting to you, but good for you for fighting for your kids!!!

Having a 2 y/o son who is my world, I could imagine how you felt about being ignored. However, there's no way to change what has already happened. You just need to think in the present state of mind and be thankful they are FINALLY getting what they have been needing all along =) I'm so happy that SOMEONE with a brain, finally came to your rescue! Congrats on your approval as well! I got approved last Friday. My surgeon makes you schedule a date before the approval so my date is set for June 20. I'm also very nervous, scared, excited, and just overwhelmed with emotions. I think it's perfectly natural to experience that =) Good luck and keep us posted!

My son was in ICU and has delays also.  It's hard to even think back on those early years.

Surgery does have risk and they should not be taken lightly.  Only you can determine if you think you are ready and a good candidate.  But I can tell you that you will have a much easier time keeping up with your little ones with the extra pounds gone.    Sending positive thoughts your way.

My twins are 5, and one is normal (well he's got a genetic disorder- hemophilia b), and the other is significantly delayed. But he's progressing. I had the opposite, they threw him in dafo's right off. (suggestion, tell them you want the two piece dafo's- they're easier on you to get on and off). The second twin has cerebral palsy, epilepsy, and significant delays. He literally is just learning to sit, but you have to put him in that position. He can hold it on a good day for two minutes. He's walking in a rifton pacer gait trainer, with a chest prompt

Anyway, I'm feeling like you are experiencing a bit of what I did... overwhelmed. You're probably experiencing some concern about lifting on your girls. You're probably fearful something will happen. So you're experiencing a bit of a mixed bag of feelings.

I can tell you for me,it worked out just fine.

Hugs
teri

It sounds like your coping reserves have been tapped... a lot of big stressors have come at once (yes, even "good" news like getting approved for surgery can be a stress too).  Have a little patience with yourself.  Are there any parent support groups in your area where your husband could learn to be a stronger advocate for your girls?  You need your husband to be a partner in this part of your life too... being the sole advocate would be stressful.  It is unfortunate that the various systems for caring for kids with disabilities are so confusing!  As a social worker, I have been the advocate for the kids I've served... thankfully, I've worked with nurses and others who knew what various service providers were obligated to provide, so when those providers denied services I could fight like hell.  When I was younger I also did behavior modification with autistic children (as well as respite for kids with other developmental disorders) and watched as their parents had to demand the services they had a right to.  From somewhat of an "outsider's" perspective, I understand a bit of what you're dealing with.  To be the best advocate for your daughters, you HAVE to take care of  yourself!  Right now it sounds like you need to do a little pampering, take extra good care of yourself and allow your coping reserves to come back up to your usual level.  Even marathon runners need to take a break... you need one too!  *smile*

Rny aside. My youngest is going to be 15 in 2 weeks. He was born 2 1/2 months early. 2 months in nicu. Very large development delays. He didn't say his first words till he was almost 4. School has been a battle since day one. He is still (in my opinion) emotionally delayed, immature for his age. They will catch up. But imagine how much easier you will be able to keep up with them when you loose weight. My son just came to the gym with me for the first time last night. It felt great to be doing something so wonderful for our selfs together.